Tag: Alcoholism

Autism Acceptance Month includes Light it Up Blue day, and people find themselves reminded, pummeled and delighted by blue lights everywhere. It’s hard to know how to feel about the hoopla when we try so hard not to let autism dominate our lives. That’s why I moved my autism posts to their own blog. To be honest, though, those were the posts that got the most hits when I began writing Lettershead back in 2009. Much as it would lovely to be vastly popular and widely read, Lettershead is about trying to keep some perspective and focus on ideas that are not directly informed by autism.

Autism casts a long, blue shadow, however. Sometimes it feels like I spent my early years escaping the shadow of alcoholism only to turn and face autism. It was good preparation, as it turns out. An anxious person by nature, living with an alcoholic taught me to be flexible and to live with a specific kind of uncertainty about what each day would bring. In recent years I discovered that if I replace the word “alcoholic” with “autistic” in the Al-Anon daily meditation book, it works beautifully, if not in exactly the same way.

The most dangerous thing I allow myself to do is look back and see the years in my between alcoholism and autism and idealize them. I think everyone indulges in this during a standard-issue mid-life re-evaluation. We see high school, college, single life, some point in our youth as something that slipped away accidentally rather than as part of a progression to a fuller life. George Bernard Shaw had it right: youth is wasted on the young. What I’ve come to appreciate by looking back is the value of the cumulativeness of my experiences. For all the randomness of my choices, they all seem to have prepared me for the life I have now, unexpected and unpredictable as it is.

Laurie Anderson said in a great interview with the New York Times that she has “zero time for nostalgia,” and that is a phrase I keep in my head because the world is changing so rapidly that I want our kids to know what the world used to be like without getting myself stuck there. In the process of talking about the past it also occurs to me that for all the good experiences we try to create for other people, we have no control over how they see or will remember it. I have no idea what my parents were thinking half of the time they were raising us, but it’s clear to me now that regardless of their intended blueprint, my own memories were built by me and there isn’t a lot they can do about it now. The reality of a large family is that there are as many versions of the truth as there are people. Our children haven’t even left home yet and they are already constructing versions of their childhood that bear little resemblance to the one I thought we gave them.

And autism? It is a changeable, petulant child all on its own. The disorder I learned about in 1998 is unrecognizable to me. I was not a refrigerator mother, my child’s brain is not empty, limited eye contact does not mean a lack of engagement, and we enjoy a level of love and empathy we were told was impossible. It morphs and changes along with the boy, advancing and receding on a schedule known to no one. It’s a cat, a bowl of Jell-O, a dish of mercury, a block of granite. I will follow it, chill it, contain it, haul it around, chip away at it – whatever it takes to deny it center stage. That’s the job, that’s my job, and every day it will change and still be the same. It’s not something I planned for, but I know it’s what I was meant to do.

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Today is the 18th anniversary of my father’s death; my mourning has come of age. The hot days of summer bring back all kinds of memories of him and playing them back and filling in details is a process that seems to dominate every July. As much as I love him, most of the years we spent in the same house would never make a highlight film of his life. And as much as he loved me, I am haunted by the bittersweet feeling and misplaced sense of responsibility that there are people and tasks that merited his attention and did not get it.

Depending on how you look at it I was in both the right place at the right time and the wrong place at the wrong time. Appearing late enough in his life that I offered the joyous, no-strings-attached love of a little girl when such attention was in short supply, and in return I got the attention every small child craves from a parent. My late arrival also afforded me a front row seat to a mid-life bout with alcoholism whose confusion scattered our family in untold directions. I found myself adrift and distracted in the eye of the passive aggressive hurricane that characterized my parent’s marriage at that time, my allegiances shifting daily and instilling in me an unsettling certainty that there is no such thing as the whole truth.

His story ends well, with beloved grandchildren, an embrace of cooking, work and friends in the community, and a rekindled friendship with my mother. She liked to say that the first 15 and the last 10 years of their marriage were worth all that happened between. As it happens, what happened in between was my childhood. While I maintain that it was a happy one, I find myself sorting through it like a jigsaw puzzle, trying to make the brightly colored, oddly shaped pieces fit.

The inequalities of parental love – or any love at all – are tough to reconcile, and because I have witnessed in other families the carnage that can result when people attempt to settle old scores, I find myself overly focused on fairness and communication with my own children, knowing full well I have no control over how they might view their lives, and my role in them, fifty years on. But what I carry with me is the sense that my parents, my family, have loved me the best they can, and that I should lift my head from the puzzle and work each day to return the favor.